Sunday, October 26, 2008

A tube in his nose!

Jonathan is doing good, we are at home and he has increased his intake of milk and hopefully we see a good weight gain tomorrow. Jonathan is such a trooper he went through his MRI and the 3 hours it took, I was scared to death crying because Jonathan was intubated and they told me he could end up in the icu because the transition of taking the tube out and him not tolerating it. Well happy to report they took it out and he didn't even need support Justin and I went and seen him and he was smiling how happy that made me! The doctor had a plan of Jonathan in taking 100ccs in 3 hours to give him a total of 800ccs in 24 hours sound great right? I knew that wouldn't work Jonathan is a grazer and he takes at max 60ccs at once but the doctor or I should say resident said in order for us to leave he had to do this I told her then she needs to be there to watch him, she went on to explain that she was very busy with a lot more patients I said well it looks like we are going to be here for awhile so we would just wait and in the meantime I will feed him his bottle! She agreed to watch and came back about 2hours later and the nurse put in 60ccs then another 40 through an ng tube (a tube through his nose that can be hooked up to a bolus and then you put the milk in the bolus and it travels down to his stomach) around 70ccs Jonathan threw up everywhere all 70ccs the doc said well I guess that won't work so after going back in forth with her about changing his feeding arrangements she agreed that I would feed him as much as I could by bottle then bolus the rest hoping to get 100ccs every three hours. He did o.k we only got 700(23 ozs) but a huge improvement when he was getting only 510ccs (17ozs) at home. The next day she came in I told her we were ready to go home with the tube until he could intake the amount he needed to grow. She then said "well he needs to intake 800 or I can't let you go" To say I had the last word is an understatement we DID go home that day!! I am really finding out you are your child's advocate 100% and you have to stand strong or doctors, therapists anybody that is involved with your child will try to persuade you to think there right and your wrong. Jonathan is doing good tonight he got 750 ccs and yesterday he got 800 so he is doing good in that department but he is really cranky now I mean crying nonstop for 4 to 5 hours a day and it sure is taking a toll on me. Justin and I went to a hotel last night and thought Jonathan would like the pool and he did but from 11pm till 7am he cried and cried and cried some more we all got about 2 hours sleep. We tried to let him cry it out but after about a half hour he threw up and only I can console him. He likes to be held and walk around if I sit he wails until he gets his way he even turns blue what the heck happened to my sweet little angel! I can say my mom and dad have helped out a lot because there are nights where I am crying right along with Jonathan I don't know what to do I am so lost on why he is doing this he always has been a moody boy but now he is just plain high maintenance I thought boys were supposed to be easy to raise! I know he will out grow this but I sure hope its soon! The biggest news is that the ct scan, mri and almost all other test have come back normal we are waiting for a creatine test to come back and if its abnormal it will explain the failure to thrive if its normal we are back to square one on why he is not gaining weight, but hopefully tomorrow he has gained something if not we have real problem because he is eating enough calories and he surely isn't running or doing any other exercises except crying (which he does burn calories) that we know of, so then we will be talking about a malabsorption problem in which he is not absorbing the proteins, fat and his acids in his belly are not doing what there supposed to and he is just peeing and pooping all his calories out. They also did a chromosome test to see if genetically something is wrong Justin and I both believe that will be normal since there is nothing that runs in our families, the geneticist did say however that Justin and I could have some genes that were passed on to him and there not be one person in our family with it, I don't know and we won't know for another 2 weeks please just keep us in your prayers that everything just starts falling into place and that his weight is better tomorrow like 13lbs something?

Sunday, October 19, 2008


So much to blog and I don't know where to start. First off when I imagined having a baby this is not quite what it was so supposed to be like. Having the news of twins was the most shocking, awesome, nervous time of my life, overwhelmed to say the least but overwhelmed with joy! Going into the hospital at 21weeks 6days overwhelmed but not with joy, scared, surreal, WHY ME! Doctors telling me the boys won't make it, I would deliver in the next 48 hours and they don't recesutate at 22 weeks (for very good reasons) again overwhelmed with fear and everything feeling surreal feelings of numbness, helplessness and scared. Makeing it to 25 weeks with both boys growing, great heart rates and moving around like crazy the feelings of joy, pride that the docotrs were wrong, relief that they would have a chance if they were born this early. Delivering two beautiful boys by emergency c-section at 25w 3d not hearing a cry from Jonathan but hearing one from our precious Preston, the medical team that we would get to know very well rushing both boys to the NICU the feelings of being ripped off, someone just sucking the air out of you, I don't know if I'm to cry or be happy so I just lay there desperate for answers of why! My husband rushing to the NICU as proud as a daddy should be taking video of the boys, they were so small, the doctors telling my husband to go and get me because Preston was very sick and not going to make it, crying for 6 hours until Preston passed in my arms he was so strong, so beautiful, feelings of hatered toward the docotrs for not saving my son for not giving me something so I wouldn't deliver wanting to blame, blame, blame! Looking at Jonathan a little fighter himself, our miracle, our hero. 21 weeks of crying not knowing what the next day will bring, scared of the phone ringing, scared for our 2 pound baby getting surgery. Then it was joys of happiness, laughter the longing of our son to be home with us, our family was complete.

After being home for 4 months, Jonathan starting arching his back takeing him to the doctors he thinks its his formula so we change it then change it again 5 times in one month he is severly miserable he is losing weight, when he was doing so good. We end up in the hospital for failure to thrive they want us to try medication (prevacid) and 5 days later were home and he is back to our happy growing baby. Then a month later he doesn't want to eat and he not losing weight but not gaining, we go to our 6 months evalutaion follow up since being dischared from the NICU the neurologist is concerned about his head control, she liked how he was grabing the bell and spoon she gave him and he put it in his mouth but that head control is very unsteady, he did lift it and lower it but he just can't keep that nogging up. Were sent for him to get a chromosome testing she thinks it might be genitics however there is nothing genetically wrong with either side of our families! We don't get the results till this friday, then he had to get a ct scan they think he might have a brain bleed that wasn't detected in the NI eventhough he had 6 ultrasounds done and all were negative, and we got the results of the ct scan and its negative and looks normal. The next thursday we go to his new ped. doctor and she wants us to go to the hospital since he lost an ounce so again here we are for failure to thrive a month later, its now 3am on monday he had an upper GI done and everthing structurally is normal, we have a scope today at 830am he is now on his i.v. They since increased his prevacid to twice a day (today he did phenominal eating 20 ozs of milk at 28 cal an ounce, a tbsp of cereal with butter, an ounce of squash). I am again terrified, emotions of sorrow, helplessness and the inevitable question of why! He has to be intubated because he will be under anestethia and they want to do an mri they are still convinced there is something wrong with his head. I have cryed so much tonight, I am so scared for him I am scared about him being intubated, I just want them to find out what is wrong and fix it make him feel better there is nothing worse then watching your baby suffer in pain and there is nothing you can do to to make them feel better, I just hold him and love him. Its so frusterating, when do these feeling subside, when do you feel like everthing is going to be o.k when do you stop worring about everything? I know I will never stop worring but when do we get to worry about simple things like when is his first tooth going to come in, when is his next immunizations when is the next well baby check up not every week check ups for weight gain, should we get his first haircut on his birthday (he really only has peach fuzz so so much for that one). All I can do is ask for continued pray all the prayers he received did something he is here by the miracle of GOD and all of your prayers. He is the greatest little boy in the world that is so loved and his story touches and will continue to touch many lives. Jonathan one day you will read this and think I was a worry wart but I want you to know I love you with all my heart I will never stop and I will be a worry wart your whole life. Your my hero little buddy I love you, mommy!

Thursday, October 2, 2008

A need to vent!

So we had our appt. with the G.I doc and I was sure Jonathan was 13 lbs, wrong he was only 12lbs 13ozs only up 1 oz in a week, HOW? he is at 17 ozs a day breastmilk and its fortified to 26 cal/oz, eating about 2 oz of solids he was gaining fine and I just couldn't produce anymore so I had to switch to formula, I am blaming myself if I would of just taking the prescription, if I would of just pumped more but he is back on donor breastmilk but its like he is not absorbing it. He is happy as can be its not a struggle even to get him to eat, he is on a nice schedule at night which he never was on. He is now grabbing for his spoon which made me cry cause I see him developing he is trying to get it to his mouth but overachieving and getting his cheek instead but he wasn't doing that even a week ago! So at the appt. the GI doc looked at him and said Jonathan has a flat head and his eyes appear large, what is that supposed to mean he looks fine to me, then looked at his hand and said I am going to get my geneticist (sp?) to take a look at him. O.K I went alone to this appt. and by now I am scared to death what is wrong with my baby?! The other doc. came in I didn't even want to put Jonathan down, I didn't need this guy to tell me anything, this is my baby and he looks fine is what I wanted to scream but instead I put him down and the doc looked at Jonathans hand and said I concur I believe they should come in and make an appt. with me. What are they looking for on his palm are they witchcraft doctors what the heck do you see when you look at my sons hands and his response was there are many syndromes out there and thats what might be contributing to his weight issue, DO YOU NOT GET IT MY SON WAS FINE HE WAS UP TO 13lbs A MONTH AGO AND I HAD TO SWITCH HIM BECAUSE I WASN'T PRODUCING ENOUGH!! So I am now stressed I have been looking at my son and he is the most beautiful baby in this world I love him more and more each day, he amazes me, hes a miracle, he is GODs gift to my husband and I when doctors told me I could never have children!!!!!! I did not make an appt. with that doc. I do however have an appt. with Jonathans ped and will talk to her I am so upset I can't quit crying of course I will love him no matter what but thats not what I expected today not at all!!